The number of dementia patients is increasing worldwide. Despite this, there has not been much research into the causes and, consequentially, potential therapies are limited. With its "Game for Good" initiative and the game app "Sea Hero Quest", Deutsche Telekom has teamed up with researchers and game developers to break new ground and, in a first step, to enable basic research on human orientation behavior worldwide.
The AOK Bundesverband, an association of German health insurance funds, shares the aims of the campaign and made Sea Hero Quest a prime focus of its trade fair presentation at the Deutscher Pflegetag 2017, the annual German long-term care conference, in Berlin. Prof. Michael Hornberger (Professor for dementia research at the University of East Anglia, UK), Martin Litsch (Chair of the AOK National Association) and Axel Wehmeier presented the initiative, its objectives and its initial results to the professional audience. We had the opportunity to interview these key players.
Is dementia getting as much public attention as it deserves?
Martin Litsch: Yes, in the interim. The latest reforms to the care system and the introduction of the new measures of the need for care better reflect the needs of dementia patients, and at the same time are becoming a greater focus of public attention. And prominent patients such as former Schalke manager Rudi Assauer are also lending impetus to the debate and a more open, more conscious approach to this sickness. The hit movie "Head Full of Honey" was another good example. It was an entertaining way to raise awareness. So the subject is certainly getting a lot of attention. I suspect it's more about making people unafraid to talk about it and confront it at an early stage. We have to continue to work on this, because with some 1.6 million sufferers, dementia is a widespread disease, which means talking about it must no longer be taboo.
Against this background, did you expect such high participation?
Axel Wehmeier: Yes and no. The figures Mr. Litsch mentioned make it clear that just about everybody knows someone who suffers from dementia. That's why we were hoping for high participation, especially since the game felt right. Our goal was 100,000 downloads in six months – and we reached this figure within 24 hours of launch! The 2.8 million people in 193 countries who played the game in support of dementia research exceeded our wildest dreams, which made us ecstatic, of course. The huge amount of data we have generated is giving the scientists sorely-needed raw materials for cutting-edge research.
What is the current status of the player data analyses? Were you drowning in the deluge of data?
Prof. Michael Hornberger: No. As researchers, we're thrilled with the amount of data. Since our first step is to advance basic research with the player data, it means the more people who give us information about their orientation patterns, the better and more exact our results become. Since we've received so much data from all over the world, we can analyze it by regional and even cultural differences. So far, all the players together have played Sea Hero Quest for a total of more than 75 years. That corresponds to more than 11,000 years of research under conventional laboratory conditions. In comparison: the largest study of spatial orientation behavior before this involved just under 600 people.
To what extent have the initial analyses of the player data enabled new insights into dementia?
Prof. Michael Hornberger: A new finding for us is that the gradual impairment of spatial awareness already begins in young adulthood. That's why it's hugely important for us to find out more about the brain's spatial navigation capabilities, to understand what exactly begins to deteriorate with the onset of dementia. The next question, which we are investigating now, is whether problems with the sense of orientation already start before problems with memory, in the earliest stages of dementia. The results of the data analyses harbor enormous potential for urgently needed developments in dementia research. In particular, early diagnosis, before people start experiencing memory problems, would be a huge milestone. This study will help us to make decisive improvements to the lives of millions of dementia sufferers in future.
What made the AOK decide to support the communications for this novel research project?
Martin Litsch: In 90 percent of all cases, dementia results in the need for long-term care – and unfortunately, the causes of dementia are still unclear. That's why it makes sense for us to support dementia research projects like Sea Hero Quest. Of course, the analyses of the game data can't replace controlled studies, but it's an excellent way to collect information that will make it possible to discover new connections and get new ideas. The minimal effort by the players generates huge value for the researchers. After all, the mobile game makes it possible to collect data 150 times faster than with conventional research methods. In other words: just one person playing for ten minutes makes as much of a contribution as a full day of conventional dementia research work. That's exactly what we want to tell our 25 million AOK health insurance customers and we hope that they will also help support dementia research.
Do you think apps could also be used to answer other medical questions? What would that require?
Axel Wehmeier: Yes, there are already many medical questions and areas of research today where big data can help lead to new findings. But what we are seeing today – particularly genome-based, in oncology – is only just the beginning. Sea Hero Quest is an impressive example of how research with digital support can help break new ground even outside genome analysis. To achieve this, a large number of people have to recognize the direct benefit of data-based services and also trust the underlying security mechanisms. Both elements are essential for using big data to help find solutions to other problems in science and research.
How can we succeed in getting patients and health insurance customers to use digital healthcare applications, whether for diagnosis or therapy?
Martin Litsch: Most of all, we can succeed if we can manage to communicate the value of digital healthcare applications for both patients and care providers. Specifically, we have to convince our insurance customers of the specific benefits for their health and for better care. But we also have to make it clear how doctors and therapists can benefit from digital offerings like this, to lessen their everyday clinical workloads. I see a huge amount of potential here, which we at AOK intend to promote more in future.
Your work is internationally networked. Do you see differences in international perceptions of the opportunities that big data poses for healthcare?
Prof. Michael Hornberger: Yes, I see differences in attitudes toward big data overall. The U.S. and U.K. in particular are much more open about big data, whereas Germany and France, for example, are more skeptical, particularly where data privacy is concerned. For us as researchers, the bigger the datasets, the better – because they make our results much more precise. This is very important for future health research and care, because this precision enables us to help individual patients much better.
Against this background, what are your expectations for the development of digital solutions for healthcare in Germany?
Axel Wehmeier: We are going to see a change in opinions about the benefits and risks of digital healthcare services. As the possibilities grow, along with trust in the data security, I believe both doctors and patients will be increasingly willing to explore new applications.
What is the next chapter in the Sea Hero Quest story?
Prof. Michael Hornberger: We're still in the process of analyzing the player data. That's going to keep us busy for a while yet. At the same time, however, we are working on enhancing the app, to enable its use in clinical studies and patient trials as well.
Axel Wehmeier: The players' willingness to share their anonymized data with us, along with the initial results, show that we have chosen the right track. Research is at its most efficient when it is comprehensive and connected. That's why we will continue to support the joint initiative against dementia with our expertise in digital solutions.